The emergence and organizational choices of patient advocacy associations: Evidence from the Italian context

Background: Within many advanced healthcare systems, patient advocacy associations are gaining a more relevant role in healthcare policy decisions. These associations provide help, representation, and voice to patients and citizens. However, although their role is important, a paucity of research exists analyzing their foundation dynamics, including their organizational decision, from a managerial perspective. To fill this knowledge gap, we formulated two research questions to investigate the motivations underlying the foundation of patient advocacy associations and the institutional pressures influencing the changes that have occurred in these associations throughout their evolution. Methods: Using a semi-structured questionnaire developed as part of a larger research project, we collected data about 31 patient advocacy associations operating within the Italian National Health Service. We employed qualitative analysis to examine the associations’ birth and evolution as well as the motivations and influences driving change within the sampled organizations. Results: Questionnaire responses provided information about the patient advocacy associations’ histories and highlighted their close links with the Italian National Health Service. Our results indicated the motivations for the associations’ establishment could be grouped into five categories: support at the system level, patient protection and support, actions to increase awareness, actions for improving patients’ health and quality of life, and dissemination of knowledge. We also identified the frequency and nature of the changes within the associations and explored the institutional pressures that influenced these organizational changes. Conclusions: The results can be interpreted considering the organizational theories that focus on organizations’ establishment decisions and how external pressures impact organizations’ dynamics and evolution.